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GP tells me that my pituitary tumor is nothing - I'm not sure what to do next
I went to my GP about 4 weeks ago as I had developed a large hump on my back (it seemed quite sudden). I had googled the possibilities and saw that Cushing’s Disease was a possible cause. My father had a very large pituitary tumor that destroyed his pituitary gland, so I was eager to find out what was going on. On December 23rd my GP called me the results of my MRI, I have a 6mm adenoma on the right side of my pituitary gland. He also tested my cortisol levels and told me they were normal and I therefore did not have cushing’s and the adenoma is nothing to worry about – he told me some people just get them. He has not referred me to a specialist and plans to do an ultrasound of the hump next.
Note: that I also had an x-ray that did not show any neck/spinal problems.
I would love your thoughts and advice as I am not as relaxed about the issue as my GP.
Note: that I also had an x-ray that did not show any neck/spinal problems.
I would love your thoughts and advice as I am not as relaxed about the issue as my GP.
What time was the cortisol test and what cortisol test was it? Cortisol is something that goes up and down in a normal body, so sometimes you are looking for a loss of diurnal rhythm (being down when you should be up and vice versa) and cortisol can cycle. He is calling your lesion an incidentaloma - but likely a GP has no idea how to test for anything pituitary. Now that you have the MRI and know you have one symptom - is that your only symptom? - (BTW, I don't know of anyone or anyway else of getting the hump except steroids - I had Cushing's too).
My advice is to find a neuro-endo who will take you with your MRI and history. Then they should be able to test all your pituitary hormones properly. You may still find duds out there in that realm but get copies of all your testing and read up as ACTH is easily botched and testing for Cushing's is rather difficult as few know how to do it properly. It can take years even a decade to get diagnosed unless you are on the ball - when you least feel like it.
A neuro-opthamologist would also help too.
My advice is to find a neuro-endo who will take you with your MRI and history. Then they should be able to test all your pituitary hormones properly. You may still find duds out there in that realm but get copies of all your testing and read up as ACTH is easily botched and testing for Cushing's is rather difficult as few know how to do it properly. It can take years even a decade to get diagnosed unless you are on the ball - when you least feel like it.
A neuro-opthamologist would also help too.
Many thanks for your advice! My doctor did a 24 hr urine collection to test my cortisol. I have many other symptoms, but I have been putting it down to my weight gain. Three years ago I gained 60 pounds in 9 months, however the weight seems to have redistributed to around my stomach (I look six months pregnant), I often sweat profusely (once again put this down to weight gain), my face is very round and fat and I have a very red face. I’ve always had a high coloring; however it is now constantly red, so much so that a doctor recently told me that he thought I had rosacea. I have days were I feel complete exhaustion. I have had anxiety for the last year with panic attacks – so a lot of my symptoms have also been attributed to that (I know anxiety can be a symptom of Cushing’s). I have also had a very irregular menstrual cycle over the last three years.
It sounds like you have quite a few symptoms. Was the jug kept cold the entire time? Did the lab mix all the jugs if there were more than one for the final sample to test? If the wrong preservative was used, any of those factors could zap the results as well, your doc could tell you that your result is normal as he is looking for 2x or 3x normal - some docs are told to look for that (crazy!!!) so get a copy of everything so you know what you have and make sure the interpretation is proper.
Even the guidelines say 3 test minimum of 3 different tests - but I was cyclical, I would never have been diagnosed under the new guidelines. I was barely diagnosed myself. It was a total battle.
Even the guidelines say 3 test minimum of 3 different tests - but I was cyclical, I would never have been diagnosed under the new guidelines. I was barely diagnosed myself. It was a total battle.
xrays are useless to diagnose neck/spinal problems. mris are NEEDED.
also 6mm isnt that small of an adenooma,so im shocked he says this, especially with your family history. i think since he gave you a urine cortisol you should request a saliva and blood next.
also i was told my cortisol was normal, however when i got the paper it said out of range.
docs think as long as the number is .5 or nearer to the normal range, its ''close enough''
i have a heniated l5 s1, and my xrays were normal, but mris showed it.
also 6mm isnt that small of an adenooma,so im shocked he says this, especially with your family history. i think since he gave you a urine cortisol you should request a saliva and blood next.
also i was told my cortisol was normal, however when i got the paper it said out of range.
docs think as long as the number is .5 or nearer to the normal range, its ''close enough''
i have a heniated l5 s1, and my xrays were normal, but mris showed it.
When I did the cortisol test there was acid in the container, however nobody told me that it needed to be kept cool. It was kept at the same temperature as my house (with full winter indoor heating). I really appreciate both your opinions, as it's reassuring to know that I'm not the only one that has gone through this, sometimes I feel like I'm going crazy. It's also interesting to know that it should be tested more than once - only did one jug. My doctor did look up on the internet what tests needed to be done, so also suspect that he is probably not an expert in this area.
Room temp would throw off the results - even with preservative and I think the acid is wrong, it can be done with one preservative and not the other - I had a few botched by the lab people using the wrong preservative but since it is not marked on the labs no way for the doc to know. In the end, it is best to just keep it cold cold cold and skip any preservatives as they tend to interfere.
If you look at my pics, I have some up with red face - acne comes with cortisol too. The sweat - ugh - I don't miss that at all!
You need another doctor - find a neuro-endo and if you saw one, find another.
If you look at my pics, I have some up with red face - acne comes with cortisol too. The sweat - ugh - I don't miss that at all!
You need another doctor - find a neuro-endo and if you saw one, find another.
i think the saliva would be easier not to EFF up? i think that's what im asking for next, and maybe you should do the same? i like how instead of taking an average, they measure individually the cortisol at night, and during day
Please ask for referral AGAIN to a specialist. No offense, but PCP really are not experts in Pit tumors. Just let your PCP the referral is for your reassurance, not questioning him.
it seems that you can hit or miss on whether ANY doctor is an expert in pituitary. It seems my primary actually knows what she is talking about(which is why she is still on my payroll lol)
i havent met an endocrinologist, or neurologist, or neurosurgeon who has ever believed a pituitary TUMOR could be causing me distress.
but yes, i do feel her pcp is not the best. i do have t o admit though, he is better than my last pcp was. atleast her doctor orders mris, and does cortisol testing with urine! ive had NEUROLOGISTS even, refuse an mri after 1.5 yuears fro mmy first one!!!!!!!!!!!
thats where my new primary came in to save the day.
but yeah to the op...i think maybe a saliva test would be a good next step, but rumpled is the cushings expert here, so maybe she would know more? im curious myself!!!!
i havent met an endocrinologist, or neurologist, or neurosurgeon who has ever believed a pituitary TUMOR could be causing me distress.
but yes, i do feel her pcp is not the best. i do have t o admit though, he is better than my last pcp was. atleast her doctor orders mris, and does cortisol testing with urine! ive had NEUROLOGISTS even, refuse an mri after 1.5 yuears fro mmy first one!!!!!!!!!!!
thats where my new primary came in to save the day.
but yeah to the op...i think maybe a saliva test would be a good next step, but rumpled is the cushings expert here, so maybe she would know more? im curious myself!!!!
I think neuro-endos are best - but you have to search around to find a good one. A PCP just does not have the skills to interpret the tests needed for pituitary testing. I agree with Totie - go to a specialist.
i meangt with the saliva test...and my advice about that? i myself am curious also, as i was gonna ask for a retest.
Saliva tests are good. Like any test - they are point in time so you have to be high at that very time and they are the free type of cortisol so if you have high cortisol binding globulin, then you may not show high. But I like them. Convenient and nice.
I've blogged here before and rumpled has helped mein the past, but don't feel bad, I feel like I may die waiting for the answer.. I'm beginning to think Endo's (Neuro or no) are cash cows!! I was sent first to a Neuro endo after a Neurosurgeon diagnosed me with Cushings (after a 3T pit tumor with contrast MRI) (he also taught pit tumors before coming to this city) BUT, because he ordered an IPSS test after determining that I had an 8 mm pit, and reviewing my symptoms.. the endo was pissed off and stopped my scheduled surgery. Since then I have found that he has (the Endo) put out reports at the Neurosurgery clinic here (which has about 50 doctors), stating I have an "Asymtomatic tumor and too small to cause problems"!! (He can't even read MRI's). It is an 8mm or was 15 months ago!! Since then, I have developed heart disease, am bordering on diabetes and now have had 2 acute mental attacks within the last 5 months, (the last one lasting 4 days, (no coordination, no memory, wetting myself, fits of anger, couldn't understand my speech, equilibrium off, don't remember a thing, couldn't even work the DVR remote or the keyboard or the phone) sent to a Neurologist (at the same clinic the endo's report is in) and this doc wants me to see a psychiatrist!! (He thinks I'm obsessing over a tumor that isn't there). The new endo I am seeing, found high cortisol, but explained it away that there was too much urine.. did a dex test around 9 am and says it's normal. I did 3 salivary tests which were all normal, and I sure don't know how that could be because I was under so much pressure that week - it should have raised the roof, but they all read .10.. go figure. I'm going to insist that my GP send me back to the Neurosurgeon for a new MRI and a midnight serum cortisol. I have every symptom that I've ever heard of.. I know it's either secondary hypothyroidism (caused by the pit) or the pit tumor is playing havoc with my whole body with one of my hormones or another or it is non-producing!!. I have thick white haris around my mouth and chin, loss of eyebrows, loss of hair, can't smell, can't taste, gained 50 lbs., big stomach, coma, flu like symptoms, buffalo hump, fat face, lethargic, can't sleep or sleep constantly, doze off easily, big ridges in my thumbnails, bladder pain, sphincther muscle pain, constipation, red flushed face, high blood sugar, high blood pressure, atrial fib, anxiety, dry cracking throat at time, loosing my voice if I talk too long, boils, terrible leg pains, right side pain.. and on and on... I'm so sick of the word "normal" and now "crazy" :'(
On second thought, I think we should all sign a petition and send it to the AMA about the Endo's and their iditotic waste of tests and charges and people's lives. Dr Cushing was a Neurosurgeon NOT an Endo... I think that should speak volumes.
Here is an interesting letter found at the Pituitary Orginization:
From Our Founder: http://www.pituitary.org/library/disorders.aspx
Greetings,
If you are just learning about pituitary tumors and the many associated problems and hormonal disorders let us start with a frank discussion of where you are: Pituitary Tumors, though described in some textbooks as "benign" can be very aggressive and can do irreparable harm. Some can even be lethal IF NOT PROPERLY TREATED!
Do not allow your physicans, or yourself or family to treat these tumors lightly or in a start and stop fashion. Get highly qualified professional help. As with cancer or heart disease, you need expert help, only. The last sixty years have been remarkable in pituitary endocrinology. In the 1930's for instance, Cushings Disease was a death sentence; patients lived an average of 4.7 years after presentation of illness. In the 1950's, the five year survival rate was 50%. The cure rate for microadenomas today is approximately 90% and improving. Experts in Neurosurgery and Pituitary Endocrinology have so improved the cure rate in a mere 60 plus years that the general medical community, and certainly insurance companies and others, tend to think of Pituitary Disease the way they think of Polio. The threat is over and the scourge has left us. Sadly, with Pituitary Tumors this is not the case. Each and every patient has to be evaluated and "fought for" or the battle may be lost.
These tumors act and grow differently in every patient. A correct diagnosis and treatment plan is essential for the survival of many of us. Yes, clearly, in many they are slow growing and may cause little apparent outward damage. Regretably, many with so called "incidental" or "non-secreting" tumors often have symptoms which their physicians simply forget or are untrained to ask about. Sexual function, mental health, overall ability to function and fit in, are all vital aspects of our lives. The tumor may not "take" our life but may in fact change it to the point of lowering the patient and his or her family into a "living hell". Study, learn, seek expert help and join the PNA as we continue to bring you the REAL facts about these insidious diseases and their often fateful consequences.
We do not mean to alarm you, but in the past twelve years we have witnessed enough deaths and suffering to know with certainty that no one has the right to deceive you about the issues you face. We do not yet have ALL the facts, nor are we here to console you. We are here to inform and alert you about Pituitary and Hormonal disorders. If we help save your life and make it better, we have succeeded. Good luck and God Bless.
Robert Knutzen.
Here is an interesting letter found at the Pituitary Orginization:
From Our Founder: http://www.pituitary.org/library/disorders.aspx
Greetings,
If you are just learning about pituitary tumors and the many associated problems and hormonal disorders let us start with a frank discussion of where you are: Pituitary Tumors, though described in some textbooks as "benign" can be very aggressive and can do irreparable harm. Some can even be lethal IF NOT PROPERLY TREATED!
Do not allow your physicans, or yourself or family to treat these tumors lightly or in a start and stop fashion. Get highly qualified professional help. As with cancer or heart disease, you need expert help, only. The last sixty years have been remarkable in pituitary endocrinology. In the 1930's for instance, Cushings Disease was a death sentence; patients lived an average of 4.7 years after presentation of illness. In the 1950's, the five year survival rate was 50%. The cure rate for microadenomas today is approximately 90% and improving. Experts in Neurosurgery and Pituitary Endocrinology have so improved the cure rate in a mere 60 plus years that the general medical community, and certainly insurance companies and others, tend to think of Pituitary Disease the way they think of Polio. The threat is over and the scourge has left us. Sadly, with Pituitary Tumors this is not the case. Each and every patient has to be evaluated and "fought for" or the battle may be lost.
These tumors act and grow differently in every patient. A correct diagnosis and treatment plan is essential for the survival of many of us. Yes, clearly, in many they are slow growing and may cause little apparent outward damage. Regretably, many with so called "incidental" or "non-secreting" tumors often have symptoms which their physicians simply forget or are untrained to ask about. Sexual function, mental health, overall ability to function and fit in, are all vital aspects of our lives. The tumor may not "take" our life but may in fact change it to the point of lowering the patient and his or her family into a "living hell". Study, learn, seek expert help and join the PNA as we continue to bring you the REAL facts about these insidious diseases and their often fateful consequences.
We do not mean to alarm you, but in the past twelve years we have witnessed enough deaths and suffering to know with certainty that no one has the right to deceive you about the issues you face. We do not yet have ALL the facts, nor are we here to console you. We are here to inform and alert you about Pituitary and Hormonal disorders. If we help save your life and make it better, we have succeeded. Good luck and God Bless.
Robert Knutzen.
Where they're kept when they're out of our hands and did they wait and do all three at once and just apply one number... labs, I don't think are infallible especially when they're not evaluated on the spot.. I'm just being facetious, I know but I'm wondering about any and all procedures they do... some good, some bad. I'm finding it hard to type this morning?? I don't mean to be such a bummer, but I sure hope the statement by the pituitary orginazion helped someone along the way.. God Bless
They can be degraded if there is too much bacteria (like urine). Also some labs are not considered reliable (sadly, the labs where you can order the ones yourself). Even though they do not instruct to do so, most of us put the samples in the fridge or freezer before sending so they are not out all the time. Some would send overnight but yes, they batch process and I have no idea if they keep them at a stable temperature (cold) or room temp.
My problem was that when I went to the Endo's office, he didn't come in with his computer and of course turned to me and asked if I had them done?? I had them done (I'm very meticiulous when it comes to my testing) one thing I did find out here is to freeze the salivary tests... would you bellive I've been told more than once "Oh they're fine even if I don't refrigerate them ??? I picked the cartridges up at LabCorp and retunred them to Labcorp. could it be because the doc couldn't find the results he made them up?? After all I had a high cortisol test and he said I drank too much liquid. The problem here was that I had one jug that I filled, but there was an overflow, so I put the rest in a tuppperware dish and took it in. The nurse told me I could take that back home, I just about blew up and then trying to explain to her that is why it's called a 24 hr cortisol.. she couldn't get the picture but finally had me go in the bathroom and dump the rest in another jug. THEN when it came back she had listed the amount as being 3750 which had my endo all over me. I had one jug and about 1 cup over. I'm dealing with imbacils ALL the time...The only high cortisol reading, and it can be explained away by an incompetent nurse that probably wrote up 2 jugs full, when it was only a cup over the jug??? Then when I went in at 8 am for my dex blood test.. I was there at 7:45, the door opened at 8, but the nurse never showed up till 8:20 and then messed around for another 20 or so minutes looking for the write up that she couldn't find it, she said, "Oh I'll' just take it and leave it on his desk".??? No wonder he doesn't have any reports, and the reports are being mixed up in volume... They probably just went and dug one up real quick for the salivary and I didn't get a dex test report until yesterday and I was in his office on Dec 22nd?? The dex test reads a <1 I asked him on the way out since he seemed so busy, if he would order anothe MRI, he said something, so when I got to the nurses station, I asked if he was ordering and MRI, she said yes, I asked if it was with contrast, she said she'd go ask the nurse, came back and said no.... I was out of there and called my GP and told him about what just happened, he NO, it has to have contrast. For the acute mental attacks he send me to the Neurologist, but because the old endo reports were in there as Asymtoatic and too small to cause problems, the Neurologist skirted the issue of the pit tumor like the plague and suggested a Psychiatrisit.. I was obsessing. So that is why, when I get up the strength I'm calling my GP and see if he will send me back to my original Neurosurgeon to order x-rays of my brain to see what has developed... since seeing him last I have atrial fib, bordering on diabetes and now acute mental attacks with headaces and light hurts my eyes.. it's weird but the peripheral problem comes and goes, I'v had it twice in about 2 months.. go figure. The only ones I trust right now is my GP and my Neurosurgeon.
Please forgive me, I'm finding it hard to concentrate today and I'm all over the place. Thanks for the advice rumpled...as usual, you're always there to give advice and help.
I am going to insist on a midnight serum cortisol along with my MRI this time, because I just read a lab report that the F24 (midnight serum cortisol)
"UFC would have failed to achieve the correct diagnosis in a significantly higher number of cases than F24" "The prsent data demonstrate that F24 is a reliable test for diagnosis of CS"
And even though my Dex test showed <1 ug/dl, they're stating "A successive study performed in normal conditions of clinical care has shown cortisol supression to be less than 2 ug/dl regrading the Dex results and CS
If that doesn't work, then I'm going to have them do a complete write up of my thyroid. Every symtom I have can actually be quoted under the Hypothyroid Symtom check. I know it is all from the pit tumor, but these dang endo's have to KNOW which hormone and even when they find the right one, they classify it as "oh something must have caused a wrong reading"...If any of you think I'm on the wrong track or have better suggestions.. I'm open for them. My neurosurgeon stated 15 months ago before he was going to do the surgery, that all of my symptoms would reverse themselves after surgery, because if it is not treated and becomes a macroadenoma, then chances of a cure are difficult not to mention the hormone therapy that would be for life. Catch them when they're microadenomas less than 9mm and there's a good chance of receovery, but when they reach 1cm, it's much tougher.
I am going to insist on a midnight serum cortisol along with my MRI this time, because I just read a lab report that the F24 (midnight serum cortisol)
"UFC would have failed to achieve the correct diagnosis in a significantly higher number of cases than F24" "The prsent data demonstrate that F24 is a reliable test for diagnosis of CS"
And even though my Dex test showed <1 ug/dl, they're stating "A successive study performed in normal conditions of clinical care has shown cortisol supression to be less than 2 ug/dl regrading the Dex results and CS
If that doesn't work, then I'm going to have them do a complete write up of my thyroid. Every symtom I have can actually be quoted under the Hypothyroid Symtom check. I know it is all from the pit tumor, but these dang endo's have to KNOW which hormone and even when they find the right one, they classify it as "oh something must have caused a wrong reading"...If any of you think I'm on the wrong track or have better suggestions.. I'm open for them. My neurosurgeon stated 15 months ago before he was going to do the surgery, that all of my symptoms would reverse themselves after surgery, because if it is not treated and becomes a macroadenoma, then chances of a cure are difficult not to mention the hormone therapy that would be for life. Catch them when they're microadenomas less than 9mm and there's a good chance of receovery, but when they reach 1cm, it's much tougher.
im confused myself on what to ask for. my last cortisol test was urine and was high...idk if i should ask for another urine...i feel the WORST in the mornings.
mornigns for me are 3pm...and i am awake at 5am...no mattah how hard i try to reverse my schedule
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